The Chronicle of a Terrible Fight (for a little girl with no hair)

When I walked into the exam room, I thought I was seeing a little girl with severe eczema. But I was wrong. Well, I did see the eczema patient. But I also saw her sister — the 18 year-old-girl with (literally) three strands of hair.

I really, really, saw her.

Mimi was standing in the corner of the room with half of her body hidden behind her dad, her head tilted down, and a wooden smile on her face. I am familiar with this smile. I wore this smile in my teenage years and early 20s — so that when kids/people stared at me or made fun of me because of my strange hair loss, I was ready to pretend I didn’t care.

When I was eight, one day, my left eyebrow and a wide band of skin above it turned white. Soon after that, I lost my eyebrows along with a large patch of hairline. In the next few months, my hairline receded from all directions in a “wavy” pattern, leaving me with less than half the amount of hair I used to have.

Today, we know that vitiligo (skin turning white) and alopecia areata (patchy hair loss) share many similarities in their disease pathways. But back then, when living in China in the 90s, my parents didn’t even think to take me to the doctor. Frankly, I am not sure if they did, anyone would have done anything except give me steroids.

“I’m sorry to intrude. But are you seeing a doctor for your hair?” I asked Mimi after discussing her little sister’s treatment, which was why her family came to see me.

“No. But I’ve already come to terms with it.” She maintained her wooden smile and stepped inside the shadow a little further.

I looked over to Mimi’s sister and father, who cast gentle and protective looks toward her.

Oh gosh. I know that look, too.

For the longest time after my disease's onset, I was in denial. Kids made fun of me.

“Your head looks like an egg with some hair on top.” My supposed “best friend” in middle school told me. I said nothing back.

“Here comes the white-haired monster!” The basketball team boys commented. I told my mother I didn’t like basketball anymore and quit the sport.

“It’s time for you to get a facelift!” The mean boy yelled across the classroom.

These words were not something you come to terms with.

To this day, I never told my parents about these comments. But they knew things weren’t great at school. When I got home, all I wanted to be was normal. So, they pretended I was fine, too.

Whenever some nosey neighbor commented on my hair, my parents stopped them by saying: “Zed is stressed from her school work! It’s pretty common for kids to have some hair thinning at this age.” Then they looked at me with that look.

After a short conversation, I learned that Mimi lost her hair a few years back. The doctors tried all sorts of things: topical steroids, steroid scalp injections, and steroid pills. Nothing worked. So she stopped going. Gradually, her hair came back and she was thrilled. But almost a year ago, she lost it again. And this time, no sign of getting her hair back.

I told Mimi we have better medications than just steroids now. And if she would allow me to, I was willing to try to get them for her. After some more discussion, though Mimi never shed her wooden smile and avoided eye contact with me the whole time, she looked a little excited about it.

“The only problem is, insurance companies don’t like to pay for these medications.” I desperately wanted to give Mimi hope. But I also knew I wasn’t the one paying for her medications.

In 2022, the FDA approved baricitinib (​Olumiant®) for adults with severe alopecia areata. This once-a-day pill was previously approved for rheumatoid arthritis until in March 2022, clinical trials demonstrated that 38.8% of patients had hair regrowth where over 80% of their scalp was covered with hair again after taking baricitinib for 9 months. And this result seemed to maintain over time.

Then, in June 2023, ritlecitinib (Litfulo®) was approved by the FDA for severe alopecia areata for patients over 12 years of age, marking it the first approved medication for adolescents! In the clinical trials, 31% of patients achieved over 80% scalp hair coverage after six months of high-dose ritlecitinib.

According to drugs.com, without insurance’s help, a one-month supply of baricitinib costs $2,894.71 at standard dose, and $5,779.92 a month if a higher dose is needed. And the monthly price for ritlecitinib is $3,978.50.

“Mimi, don’t get discouraged if you receive a denial letter from your insurance company,” I told her, as I tell many of my patients these days, “because if you get the letter, I get it, too. And know that my team would already be fighting with them on your behalf.”

Though this sounds like a promise, it’s from pure frustration. Mimi was from a working-class immigrant family. She had state insurance. This was going to be an uphill battle.

“Thank you for fighting the good fight.” Mimi’s dad told me before they left.

I nodded.

As many of you might know from my tweets, it has not been a good fight.

The Chronicle of a Terrible Fight

Day 0, I prescribed baricitinib, thinking it was a “cheaper” medicine that had been on the market a little longer than ritlecitinib — we might have a better chance at getting it.

I was wrong.

A prior authorization was required, of course. So my team did that, using my very detailed note with high-quality images documenting Mimi’s disease severity on the same day.

Day 5, we received denial letter No. 1 with very confusing wording. A clinical pharmacist helped me decipher the letter and I added more information and evidence to my note. We appealed the denial with my new note.

I dreaded going outside during PE classes in high school. While other students enjoyed the gentle breeze in the spring, I secretely wished the wind would stop blowing my hair up and revealing my true self to the world.

Day 13, we received denial letter No. 2 with the exact wording as the last letter. At the bottom of the letter, there was a number to request a peer-to-peer review. A peer-to-peer is a phone conversation with a physician who works for the insurance. A few years ago, I had a peer-to-peer to request an MRI for my patient’s back pain. The “peer” I talked to was a retired gastroenterologist somewhere in Miami, thousands of miles away from where I was. I felt utterly frustrated to have to explain neurological symptoms to a doctor who spent his career working with the digestive system.

Day 20, time for my peer-to-peer conversation. My schedule was blocked for half an hour for this (a time in which I could have seen two patients), and I gave them my cell phone number for the call. I waited around. No one called. Then a nurse ran across the clinic to tell me that Lily’s insurance called to reject the peer-to-peer — after they agreed to set up the meeting a week ago. We were denied for the 3rd time. “This is a hard stop,” the person on the phone told the nurse, “you have to fill out an exception form for further consideration.” They then refused to talk to me, declined to explain why, and sent us the 2-page form. I was too angry to look at the form.

In college, I was finally allowed to put on some makeup. So I started to paint my eyebrows. I never got too good at it. And I also experimented with different hats. Baseball caps didn’t cover my scalp enough to hide my defect. Winter hats were too hot in the summer.

Day 21, I filled out the exception form and attached an additional 35 pages with research papers and FDA approval information on baricitinib. This was faxed over.

Day 28, I realized we hadn’t heard back about Mimi’s prescription. My nurse got on the phone to call insurance. After being on hold for 30 minutes, we were told the exception form was never received even though the fax machine clearly showed it went through. She faxed the 37-page document, again.

Day 30, we received denial No. 4 without a legible explanation. We got on the phone to ask why. Hours later, we were told we filed the wrong exception form — the form they gave us! We demanded the right form this time and filled it again.

Ten years ago, I found the perfect hat — a brown fedora hat that not only went low enough to hide my problems, but also fit my head perfectly without giving me a headache! The fabric and its foldable nature made it perfect for all seasons. I’ve worn this hat ever since. I would literally go across the city to look for it if I ever lost it. (I haven’t lost it.)

Day 35, we received denial No. 5 which looked exactly like denial No.4. My nurse got on the phone again and was put on hold for 1 hour and 40 minutes. Finally, she had to hang up and take a walk out of frustration. I told her I would buy her lunch/dinner/a massage/whatever she wanted once we got the meds for Mimi.

Day 38, we finally got through to insurance. The person on the phone said: “How do you spell ‘alopecia’ so I could google it?” My nurse fought the urge to smash the phone against the wall. “Can you just tell us what we need to do to help this patient?” I grabbed the phone and yelled. We received a copy of the “preferred” medications. And ritlecitinib was on it!

My ex-boyfriend called me “ugly” when we fought.

Day 42, I wrote a new note in Mimi’s chart and prescribed ritlecitinib, instead. In this note, out of desperation, I wrote then highlighted the below sentences: “Severe alopecia areata isn’t just about losing hair. It’s associated with significant risks for mental health conditions including suicide. It’s my clinical judgment and professional opinion that this patient needs and is entitled to this medication. If the above complications of untreated alopecia areata were to occur, the payor which has denied the treatment team’s requests FIVE times is ethically and professionally liable.”

Day 42 afternoon, my team filed for another prior authorization for the new drug (ritlecitinib).

Headbands are a godsend. I am now outdoors all the time with one on. I wish I could be truly free. I wish I could wear my hair up. I think I would look pretty handsome with very short hair.

Maybe one day.

Day 43 (current time), we received denial letter No. 6. Reason: must try and fail topical steroids. We are officially back at square one. It took us hours and days to pack in a punch, only to be taken down within minutes. I felt like we were losing ground faster than we could possibly run.

To cut costs, insurance companies (“payors”) do whatever it takes to deny medications. Some payors deny up to 49% of all claims. And only less than 1% of these denials may get appealed. On paper, these denials are maliciously confusing, against medical standards, and most of the time, deny basic human logic. The tricks insurance payors play, such as requiring prior authorizations and dodging phone calls, waste medical personnel’s time and compromise patient care — not just the patient who is their “client,” but all the patients whom the doctors, nurses, and pharmacists are too busy to care for because they have to play phone tags to fight denials. Such despicable games are the payors’ way of dictating what happens in the exam rooms without ever being there.

Two years ago, I wrote a letter to Little Abby, the first patient I’ve ever met who had my rare version of alopecia areata — ophiasis. It’s not my best writing because after I wrote it, I couldn’t bring myself to edit it. To be honest, the emotions in this letter are still raw. It still hurts me to retrieve memories when I was younger.

I am older and stronger now. I am in a very good place in life. But to some extent, I am still hiding. If I — a skin doctor in her mid-30s — am still trying to come to terms with my disease, Mimi is not there, either. I know it in my heart for that to be true.

When Monday comes, I will have to call Mimi to tell her the bad news that I’ve lost “the good fight.” I got her hopes up only to let her down again. I hope she will believe me when I tell her I am not ready to be defeated yet and that I will keep trying.

When the good fight turns into a terrible fight, how long can we hang on?

Disclaimer: patient identity and case details have been significantly altered to protect confidentiality.